From Patient to Parent: Changing Roles
Dillon and his son, Jaxon
Dillon Wheatley is no stranger to life with congenital heart disease, however, his role has shifted from being a patient himself, to now being a father of a son with CHD. Dillon was born with a ventricular septal defect (VSD), requiring open heart surgery at 6 months old, as well as a subsequent surgery at age 7 related to scar tissue. But his experience with open heart surgery did not stop there.
Dillon’s son Jaxon was born with coarctation of the aorta and an atrial septal defect (ASD) and would undergo open heart surgery at 6 days old. Dillon’s experiences with his son’s diagnosis and treatment have compelled him to write a book titled: Jaxon’s Journey.
In writing this book, Dillon aims at raising CHD awareness and connecting with others who have faced similar challenges. Dillon shared some words with me related to his experience: “Seeing Jaxon with a scar so similar to mine is something I never imagined experiencing as a dad. Going into his surgery, I thought my own history with CHD might somehow prepare me for what was coming. It didn’t. Being the patient and the the parent are two completely different experiences. I was too young to remember much of my own surgeries, but I will never forget handing my 6-day-old son over to the surgical team and trusting them with his life. There was fear, helplessness, exhaustion, prayer, hope, sometimes all at once. Watching Jaxon fight also gave me an entirely new appreciation for what my own parents must have gone through with me. That patient to caregiver perspective became a huge part of why I wrote Jaxon’s Journey. I wanted other CHD families to know that someone understands those hospital rooms, the waiting, the setbacks, and the little victories that suddenly mean everything.”
One thing that Dillon really wanted to share with everyone is the idea that “People need people. You are never alone. Our journey showed us just how important support is during the hardest moments. Whether it comes from family, friends, medical teams, other CHD families, or even complete strangers, sometimes people help carry you when you don’t have the strength to carry yourself".”
You can find Dillon on Instagram @dillon_whatley23 and his book: Jaxon’s Journey is available on Amazon.
I want to give a big thank you to Dillon for reaching out to share this amazing story and unique perspective. From all of the previous experiences seen in the community section of this site, there remains a common theme that fits exactly what Dillon stressed above: we all need someone to lean on. It can be through words of encouragement, cooking a meal for a friend in need, or simply sitting with someone in silence just to be by their side when they need you most. Life is precious and it is important to care for the people you love. Until next time!
